Peter Longstaff hold up his treatment cards showing what was recorded each time a haemophiliac took factor 8 treatment.

(Image, Grayson Archives)

The infection of Dame Anita Roddick with hepatitis C (who founded the Body Shop championing ethical standards in beauty products) has for many years been reported as a “transfusion” case during childbirth as opposed to infection via treatment with manufactured blood products such as factor concentrates. In the Sussex Express, a tribute from Prime Minister, Gordon Brown referred to Roddick, who died in 2007 of a brain haemorrhage and had cirrhosis of the liver, as “one of this country’s ‘true pioneers'”. He stated, “she campaigned for green issues for many years before it became fashionable to do so and inspired millions to the cause by bringing sustainable products to a mass market.”

Looking into the background of Roddick’s infection, back on the 15th February 2007, the Guardian reported,

Dame Anita Roddick, the founder of the Body Shop, revealed yesterday that she is carrying hepatitis C and has cirrhosis of the liver, one of the condition’s long-term effects. The 64-year-old entrepreneur said she had contracted hepatitis C through a blood transfusion while giving birth to her youngest daughter, Sam, in 1971.

So it was with some surprise that the author of this blog Carol Grayson heard a recent podcast with Caroline Wheeler author of the newly released book, Death in the Blood: The inside story of the NHS infected blood scandal, where it was suddenly alleged Roddick’s infection came from factor 8 concentrates.

The podcast can be heard here,

https://podfollow.com/1649210131/episode/90c07b9e7c62feed8af03d429feaf788bf739479/view

The Evening Standard reported,

Dame Anita contracted the disease from a transfusion of contaminated blood, 20 years before a national blood screening programme for the virus was introduced in 1991.

The article highlights Roddick saying,

“I am not angry, there was no blood screening programme for hepatitis C until 1991, but what bugs me is the Government’s conspicuous absence on this subject, they are not doing anything about it,”

This comment in itself is significant as it indicates Roddick was referring to a whole blood transfusion rather than blood products. She is referring to the date when blood was first tested for hepatitis C to avoid transmission of the virus via whole blood. With regard to those infected through factor concentrate treatment such as haemophiliacs with an inherited blood clotting disorder, they refer to the date when blood products were first heat treated to kill off hepatitis C and HIV and this was 1984. (The date is later in Scotland due to methods used which were not as effective.) Government and medical journal sources and numerous books have confirmed whole blood was never imported. It would have been too impractical to do so and had a much shorter shelf life than concentrates however factor concentrate treatment was imported from the US in large quantities with the first product licences granted in 1973.

The date given regarding Roddick’s infection is 1971. There are instances of haemophiliacs being given imported factor concentrates in 1972 including Grayson’s husband Peter Longstaff but this was usually on a “named patient basis” on application and for those on treatment trials. Longstaff attended a special school for children with disabilities named Lord Mayor Treloar College. He was on treatment trials in the early 1970s as his official records show and the college has a treatment centre at the school. Longstaff was infected with HIV, hepatitis B and C and exposed to variant CJD all through his treatment with factor 8 products. Roddick never mentioned having any clotting disorder. It is likely she was treated either at an Accident and Emergency Unit or a maternity hospital or unit. As she was treated for bleeding in relation to childbirth it is highly unlikely there would be time for a named patient basis application.

With regard to treatment with UK factor concentrates, the now disgraced, Department of Health Self Sufficiency Report 2006, deemed a “whitewash” and withdrawn on the evidence of this author, does mention some very early NHS factor concentrates being produced, “in the UK, NHS factor VIII concentrate was being produced as early as 1969, and its production rose steadily, almost doubling between 1976 and 1977” however haemophiliacs that were the biggest users of this treatment mostly remained on cryoprecipitate until 1973 and importation began, unless they were part of UK treatment trials on a named patient basis. The other treatments at that time were Fresh Frozen Plasma (FFP) or Cryoprecipitate from the UK. The 1971 treatment is the only treatment date referred to by Roddick herself when she discusses her infection.

This 1971 date is echoed by her daughter in an interview with BBC Newsnight where again she refers to a blood “transfusion”.

For the last few years, the mixing together of two entirely separate cases haemopohlia and whole blood in the media, and the Infected Blood Inquiry set up in 2018 to investigate how patients were infected have caused much confusion in people. The two groups campaigned separately for years as the Haemophilia Society doesn’t have a legal remit beyond inherited bleeding disorders and the Hepatitis C Trust covers whole blood cases. The circumstances and evidence around haemophilia and whole blood are very different. In some cases more recently the two have campaigned together but the joining together has increased the confusion and in some cases caused great damage due to the mix up of cases where for example people infected through whole blood transfusions have wrongly stated they had received US blood. This is highly distressing for haemophiliacs that actually did have factor concentrates and launched cases in the US in the early 2000s.

In 2017, I read interviews with Roddick’s daughter who appeared to be confusing the two. I did leave messages via the publications publishing her story to try to explain the differences. In one 2017 BBC Newsnight interview she can be heard discussing a blood transfusion responsible for her mother’s infection (not factor concentrate treatment) then when asked who is to blame naming the pharmaceutical companies. If Roddick had a whole blood transfusion, the blame would lay with authorities in the UK such as the National Blood Transfusion Service not pharma companies.

BBC Newsnight interview 31st July 2017

If Roddick had factor concentrates that should be recorded in her medical or treatment records, this was necessary in case urgent product recalls needed to be carried out. There are a number of other potential risks related to manufactured treatment such as bacterial contaminant getting into a bottle which occasionally occurred. For haemophiliacs this recording was done on a green card system and included the following,

1. Name and Date of Birth of patient
2. Date and Time treatment is given
3. Name of product such as Hemofil
4. Name of company such as Baxter/Hyland
5. Batch Number plus HT if heat treated
6. Expiry Date of Treatment
7. Site and type of bleed such knee bleed into joint
8. Amount of factor concentrate given
9. Signed by person giving treatment
10. This was in case of an adverse clinical reaction, development of inhibitors, recall by the company

These batch number treatment details appear to have sometimes been kept separate to the medical records. If Roddick has been infected with factor 8 products presumably Wheeler, as an investigative journalist and author will have asked to see records of batch numbers to verify this or medical notes within Roddick’s records that specificly state the use of factor concentrates, what dosage, how many units etc. Concentrates come in small glass bottles containing a white powder (freeze died concentrates) and are mixed with sterile water for injection into a vein. Grayson has been through this process herself when asked to verify her husband’s treatment for journalists covering his story of infection.

Also it is important to state that the notes of a person with a lifelong medical condition such as a blood clotting disorder are usually kept for several years after death. Grayson has included a photo of her late husband displaying a photocopy of one of these treatment cards needed for litigation in the US so his treatment could be traced back to source (such as a US prison). Longstaff’s lawyers confirmed to the couple and the BBC that he had received factor concentrate products where a named HIV infected donor had sold his blood at Arkansas State Penitentiary. Longstaff received the treatment AFTER the prison plasma centre was closed down on the grounds of safety. This treatment was part of the “dumped” treatment second generation litigation. The pharmas accepted Longstaff’s case and others and an agreement was reached with a silence clause some years ago with the bulk of the responsibility put firmly at the feet of the UK government as having first line “duty of care” regarding treatment safety.

Stuart Mclean who became infected with hepatitis C after being wrongly misdiagnosed as a haemophiliac and treated with factor concentrates also wants to understand why it is suddenly being claimed Roddick had factor 8 when there has been no reference to this before. He also pointed to a 2017 video interview with Roddick’s daughter highlighting her mother’s infection via a blood transfusion. McLean noted a publication stating that Roddick’s youngest daughter Sam was born in Rustington in the UK, so she had been in the UK when giving birth (as opposed to being treated abroad.)

Sam Roddick was born on July 1, 1971 in Rustington, Sussex, England, UK

https://www.imdb.com/name/nm3045956/bio/

Mclean had requested confirmation of batch numbers via his wife, pointing out dates of when factor concentrates were first used in the UK which challenged the Wheeler podcast narrative and the statement claiming factor 8 was used. At that point Wheeler made it clear she wished to end the contact without providing any evidence.

Roddick dedicated her time to the Hepatitis C Trust, where she was a Patron and was an inspiration to others that were infected with hepatitis C through blood transfusion whilst pregnant and is mentioned in several statements to the Infected Blood Inquiry.

Roddick struck Grayson as a woman to whom truth and justice was very important on so many issues and felt a strong connection to many of her causes. Grayson was a regular customer at the Bodyshop and still misses the Woody Sandalwood oil which reminded her so much of trips to India. She feels for her daughter Sam and understands the importance of having the correct information and evidence with regard to the death of a loved one. Grayson lost her husband and brother in law and Roddick’s daughter lost her mum. The truth and establishing the correct evidence regarding how Roddick came to be infected with hepatitis C must surely be the goal of the family.

Grayson has questioned Wheeler before by email over her reporting, in one case where Grayson’s old evidence was being presented as “new” .When she made challenges to several publications, in a consortium, the word “new” was removed as incorrect. Evidence that had been published before well known to this author was clearly being rehashed. Grayson and her campaign colleague Colette Wintle were also concerned over recent Sunday feature articles on Contaminated Blood that were confusing and poorly written, An opinion shared by others reading the articles including one lawyer..

Anyone writing a book, article, dissertation must be prepared to be challenged, questioned and defend their work. It is part of the process of learning. Therefore as the Roddick case is in the public domain Grayson challenges Wheeler to provide evidence of her claims that Roddick had factor 8 concentrates. This doesn’t have to be put into the press but can be sent to Grayson privately or her lawyer Milners. Otherwise in the absence of evidence with the only information provided stating Roddick had a blood transfusion then that is all people can state regarding her case.

If Grayson is incorrect and batch numbers of factor 8 are provided as in the case of her own husband, she will hold up her hands and accept this. For Grayson this would mean Roddick’s case is considered with the correct evidence, she herself will have learnt something new and it would also show she was right about her concerns over reporting on contaminated blood in the media which in some cases has been abysmal with regard to the level of accuracy. So Caroline Wheeler are you prepared to accept this challenge and answer the questions of a widow who is part of the Contaminated Blood community and has never waivered from the path of seeking truth and justice…. over to you?

As Grayson writes this, she gets sight of Wheelers new book, Death in the Blood and there on page 25 it highlights, “the origin of the blood Roddick received is unknown”. Wheeler needs to do some explaining on how she came to the conclusion after so many years that Roddick had factor 8 and not a whole blood transfusion or is this another of Wheeler’s stories not properly researched?

Carol Anne Grayson is an independent writer/researcher on global health/human rights/WOT and is Executive Producer of the Oscar nominated, Incident in New Baghdad.  She was a Registered Mental Nurse with a Masters in Gender Culture and Development. Carol was awarded the ESRC, Michael Young Prize for Research 2009, and the COTT ‘Action = Life’ Human Rights Award’ for “upholding truth and justice”. She is also a survivor of US “collateral damage”.